I have been really loving the support that I’ve been getting from friends through my own struggles with IBD (irritable bowl disease) and Crohn’s disease. I wanted to share with my readers that I am not the only story.
When I started this blog, my goal was to make it all about how awesome my experiences traveling on a private jet are. Looking back it was honestly really egotistical of me. Shortly after, the universe shuffled my plans as I got really sick and took over a month off of work! I wasn’t traveling. My life wasn’t “awesome”. Instead of sitting on a private jet, I was laying on a couch for an entire month in immense pain.
Through time it became my mission to share my voice and to tell people all about my experiences with Crohn’s disease, and my day to day experiences! I realized that a lot of these topics that I talk about are kind of taboo. Who wants to talk about poop and getting cameras stuck up your bum, let alone posting these things publicly for anyone to read? I’ve received phone calls and messages about how brave I am for sharing my story, many people wishing they could use their voice to help others.
I recently posted an interview with Lanny to share his story and experiences with Crohn’s, and after some really great feedback I realized that there are more people who deserve to have a voice. There are more stories that can be related to! When I was researching my disease, the best thing for me was to realize that I was not alone.
It is reported that over 3 million adults in the US have IBD, Ulcerative Colitis and/or Crohn’s disease and this number is rising! So I reached out to a friend who has been incredibly hands on with their own journey with IBD, Lena. She has been absolutely amazing in reaching out to support me, and even sends me links to great recipes or food items that work with our odd diet restrictions. I started calling her my Spoonie Sister. (For those of you who don’t know what a “spoonie” is check out this blog post . ) Here is Lena’s experiences with IBD:
How many years ago were you diagnosed with IBD? How old were you?
October 2018. I was 25, but I was sick for 3 yrs before anyone told me what was wrong.
Where would you say your journey with IBD Actually began?
It began after graduating college and living in NYC.
What were some of the symptoms early on?
Intense weight gain while I ran 3 miles a day. I would eat and 30 mins later pass out from insane pain.
Now that you have been diagnosed, what medications have you taken for IBD? What were your experiences with them?
Xifaxan, viberzi. No side affects other than being able to live my life pain free.
Have you had any surgeries or procedures for IBD? if so, what and how many?
Just a colonoscopy, luckily!
What preps have you used for colonoscopies?
Tucks pads, I ate liquid diet the day before. I used a lot of Nauzene. Ice chips. Watched all things Harry Potter. Ice roller for my face. Squatty potty. Lavender essential oils. Ice packs. Boy friend pillow.
What are some of the other things you’ve done besides medication to battle IBD?
Diet, yoga and stress management
What advice would you give to someone who may have had some of the same symptoms that you have had or someone newly diagnosed with IBD?
Keep going to doctors until you find one that you connect with and is willing to go through several treatment options. It took me 6 doctors.
Thank you so much for sharing your experiences Lena! You are so incredibly strong and I’m grateful to have you in my corner! If you ever need SpoonieSisterSupport please reach out to me anytime! I’m here to help you in any way that I can! The only way we get through this is together!!